Friday, August 31, 2012

Status Migrainous, DHE, Lyme

Again I have to apologize for not being around on the blog.  Not that I'm very good at posting regularly but I've been really scarce lately.

I've been learning about Lyme disease and Status Migrainous.  Having a very sick daughter who's being treated for both of these things at the same time.

The doc (a neurologist) is treating her for the Status Migrainous with DHE and antibiotics for the Lyme.  The Lyme is a possibility as she has a positive titer and one band showing but she apparently needs 2 bands showing (this might be Greek to you but that's's a PITA to be diagnosed without the 2 bands).

Most everyone has heard of Lyme so there is a sort of passing knowledge about it - it's not a good thing to have. Her neuro is treating her for it so that is at least being managed with antibiotics.

More worrisome to me is the protracted migraine. She's had it for 31 days now.  Yes, 31 days.  She's been in pain and has had severe nausea for all of this time.  She's getting IV DHE as well as steroids and a anti-nausea medicine 3 times  day. Her arms and hands look like pincushions.  The nausea, the vomiting and the heat is making her dehydrated and she's had to get IV fluids to keep her hydrated. Next week she gets a IV and a home nurse to administer the drugs and keep the IV cleaned a few times a day. Hopefully that will help so she's not getting 3 different IV sticks a day. More if they can't find a vein that will take the IV.

This is managing her pain to a certain extent but not curing her so far.  Her head hurts at a level 3 once she gets the meds. If the meds wear off she goes up to a level 8 (btw, I'm using a 1–10 scale).  She feels a 3 is manageable.  I've had migraines, I don't know how she can function at a level 3. Maybe because she's had migraines her entire life and has withstood a lot of pain over her lifetime. She's only 20 but that's a whole lotta life with migraines.

If you know someone who is a migraineur please be sympathetic and please do not minimize it as a "headache".  People have often given her a casual: "Oh  come on, it's just a headache" to either make her feel guilty that she can't just shake it off and do whatever they think she should be doing or think she is just trying to shirk off work/play/whatever. People like teachers, friends, strangers, etc. The number of people who are ignorant of migraines is a pretty large percentage of the population.

I know most of them don't mean it as a mean thing but because she forces herself to continue on with a migraine they don't always understand when it becomes too much for her.

I do want to thank every single person who understands or even if they don't understand are sympathetic to anyone who suffers from migraines.  Your graciousness and generosity is a beacon of light.

Hardest of all is watching her go thru this pain right now.  I can't fix it, I can't control it and I am totally frustrated and yes, I am worried. She's my baby.  Today I sat with her for 10 hours while she got IV fluids and meds.  She was actually there for a few hours longer as I was at work until she got admitted and then I left work to be with her.  Tomorrow we go back, rinse and repeat. I am hoping the headache breaks either from the DHE or if it's Lyme that's causing it, the antibiotics will break it.

If you read this I'd rather not hear horror stories of how long it COULD last.  I've already heard them or read them and I'd rather not focus on that...I already worry enough about it.

Maybe later I'll add links to all the things I've posted about is always a good thing but tonight I'm just too tired to go looking for all those links.

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